Incy Wincy and M.E.

Incy Wincy Spider

Incy Wincy Spider climbed up the water spout,Down came the rain and washed the spider out,Out came the sun and dried up all the rain,

And Incy Wincy Spider climbed up the spout again.

Just like Incy Wincy (or some people call him Itsy Bitsy), life with ME is a constant battle to move one step forward. Living with a M.E. is difficult but I think most people with this neuro immune condition have personalities that shine through this chronic illness and are always striving either through campaign and advocacy work or through searching for recommended treatments etc, to get well again.

We will win this battle and we will reach the top of the spout one day!

PRENOTE: A second small yet successful demonstration for the rights of people with ME/CFS was just held. A key goal of these mini-demos is to inspire more of the same; we hope you (those who are able) will hold a mini-demo, too. Only 1-5 people are needed to pull one off, get some press attention and make some waves. Make your own signs, or we can send you our pre-made 25-foot banner. All 3 goals of this Mini-Demo Strategy are found below.WHO CAME: On May 25, 2011, an ME/CFS public demonstration was held in front of the U.S. Department of Health and Human Services (HHS) Region 9 headquarters, in San Francisco, California. Despite the rain, eleven people came: two people with ME/CFS, Susan Kreutzer and Andy Au; three family members (mother, mother-in-law, spouse), including the protest co-organizer, Bobbi Ausubel; and six able-bodied friends. The multicultural group included people of Asian, Latino and Caucacasin decent, gay and straight, young adult and seniors. The people with ME/CFS came in spite of all the obstacles and barriers this illness throws in their way.

SETTING UP: At 1:30 pm, the protesters positioned themselves on the busy, highly trafficked sidewalk in front of HHS Region 9, also known as the Federal Building. They unfurled a 25-foot banner that read: "Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!" (This banner was first used on May 10th at HHS national headquarters in Washington DC:http://cfspatientadvocate.blogspot.com/2011/05/hhs-demonstration-may-10-2011.html).

SECURITY: Security came out immediately in the form of one person. He appeared to be the Head of Security of for the Federal Building/HHS. Bobbi told him what they were doing and how she had been told by the city police that they could be on the sidewalk without a permit, as long as they didn't have a loudspeaker. The security officer agreed, took some of the demonstrators' literature and went back inside. It was all very relaxed.

PRESS: The protest co-organizers, Bobbi and Rivka, a mother/daughter team, had spent the days prior reaching out to the press. Success! The New York Times reporter who has covered ME/CFS in the past came "to say hi" (no article expected, but good to keep relations going) and a San Francisco Chronicle reporter and cameraperson came as well. The resulting article is found here: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/05/26/BANA1JL1AH.DTL Though this article was disappointing in the usual ways, its publication was still good news, as the SF Chronicle is one of the largest papers in the region. Plus, the reporter said she hoped to do an additional story on kids with ME/CFS. And to our knowledge, this is the first time an ME/CFS protest has made news in the U.S.
ACTIONS: Standing in front of HHS with the banner for 1 hour, the protesters videotaped prepared and spontaneous statements (see resulting video), handed out flyers to passers-by and in a surprise action sang the song, "Clinical trials now!" (Also seen in this 2010 video:http://www.youtube.com/watch?v=8t1Xqp1LDxM).

HHS MEETING: Also surprising, after the demonstration, there was a group meeting for a half hour with Eric Alborg, Regional Outreach Specialist of HHS's Region 9. His boss, who was out of the country, is Herb Schultz, the Regional Director of Region 9. In the hierarchy, Alborg is positioned directly under Schutlz. (Alborg's job main is to implement the new health care program.) Alborg had thought he'd be meeting with just one person, Bobbi, and had not known about the demo in advance. But after checking with someone (we don't know who), he agreeded to meet with the whole group, that is, the two protesters who have ME/CFS and their three family members. Alborg was open to listening and wanted to know why the protesters were there. People talked about the concerns and needs of people with ME/CFS (funding and clinical trials!). The demonstrators put the struggle regarding ME/CFS in the context of HIV/AIDS, linking the possible retrovirus connection (XMRV). This discussion made sense since HIV is historically a key issue in San Francisco, due to a large and politically active gay community. The protesters emphasized to Alborg that HHS should have an understanding of the politics of all this, due to HIV/AIDS. They also told him that the information about this demo, and the meeting with him, would not be limited to the small group he was presently gathered with, but would be rapidly disseminated all around the globe via the internet, and that ME/CFS was an issue that was not going to go away.

Alborg's suggestion to the protesters: 1) Call/lobby local institutions and legislators; 2) build coalitions with groups with other disabilities and chronic illnesses -- groups that have already-established power and influence. (Though he did not say it, one protester went away thinking HIV/AIDS and Autism groups).

Bobbi gave Alborg copies of a letter she had written with her own personal statement on top, followed by a list of basic needs/demands from our ME/CFS community. Bobbi's letters were addressed to HHS Secretary Sebelius, NIH Director Collins, NIAID Director Fauci and Schultz (Head of HHS Region 9). Alborg promised to make sure the letters were given to each.

OUTCOME: Protesters reported leaving the demonstration and HHS meeting feeling great; like they had done something important, both personally and politically.

* * *

Note from Bobbi, demonstration co-organizer

== Personal statement, given to HHS officials ==

I am the mother of a daughter with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, which has very severely limited my daughter's ability to lead a simple work and social life for over 20 harsh years. I have been her primary support. Much of the time she has been so sick she is often homebound or bedridden with disabling symptoms, not just "fatigue"! Our family's life activities and resources are centered around the health needs of this daughter (and sister) we love. We expect more support from our government by way of research and clinical trials for this disabling disease that affects more than a million Americans. Most people with ME/CFS are too ill to be standing outside HHS today for a demonstration. Those of us gathered here are speaking for all who are ill, and we demand to have more research and clinical trials now.

BAusubel (at) yahoo (dot) com

* * *

Note from Rivka, demonstration co-organizer

== The Goals of Our Mini-Demo Strategy ==

It is my hope that ME/CFS patients will rise up and hold a number of these small mini-demos around the country, at HHS and CDC regional offices, of which there are 20. Demonstrators can use our banner, which we'd ship to them, or they can make their own signs. The 3-part goal of this strategy is to:

1. Get on HHS's radar (get ME/CFS and XMRV patients on HHS's radar).
2. Get press attention (get the patients' perspective in the press).
3. Get the ME/CFS community used to images of people with ME/CFS demonstrating and protesting. Once they are accustomed to these images they won't be as timid or trepidations about going out and doing it themselves (the ones who are able, of course).

The Final Betrayal

The Final Betrayal

I'm too sick at the moment to start my own blog, and even if I had one I wouldn't be able to say what I'd really like to the way I'd like to. But in light of months of following the scientific (and anti-scientific) developments in the XMRV story, and given that it is XMRV Blog Week, I feel the need to say something. So here it is.

I don't know for certain whether XMRV and any related MRVs cause ME/CFS, or are co-causes or co-factors, but neither does any other scientist. I don't know what role it plays in ME/CFS, but neither does any other scientist.

I know this: I will not spend the rest of my life sick or die young because some researchers and research journals made a political decision to "close the door" on the MRV-CFS association before it was appropriately investigated. I want a true replication study NOW.

I want 'science' journals to stop publishing negative studies by authors who haven't used clinically validated assays to detect XMRV. I want 'scientists' to stop claiming that non-replication studies ARE replication studies. I want any researcher, journal editor, or 'science blogger' who claims that true replication isn't necessary in science to be forced to seek alternative forms of employment. I want an investigation by the Department of Health and Human Services into why the NIH's tiny CFS grant review panel has turned down a series of grant applications by the WPI.

I want at least one sliver of justice for millions of sick people who have had none. If nothing else, we should have the benefit of supposedly dispassionate, objective science. We were raised to believe that science is the backbone of modern civilization, and the last pure thing left in a world rife with politics. If we cannot even get THAT without political interference, then even the highest court of appeal is corrupt.

For well over two decades we have trusted that, at some point, the system that was ostensibly built for us will finally work in our favor. At what point do we decide as a community that it clearly will not? And at what point will we protest en masse that our rights as citizens and as human beings are being denied by medical, "healthcare", political, and scientific establishments?

The most blatant recent example, and the most immediately crucial issue, is the organized attempt to bury XMRV-CFS research. With whatever energy we have, we need to fight to stop that from happening. NOW. We need to let those who would bury it, or let it be buried, know that we will not tolerate this. We need to let 'advocacy' organizations know that they should either support us in this endeavor or stop posing as advocates and get the hell out of the way. We need to strategize ways that we as patients and their carers can have a real impact on the scientific institutions and policy-makers that are normally walled off from us, and on the media that increasingly serves only as a mouthpiece for the 'official sources' with the best media connections. If the high-profile discovery of a potentially pathogenic gammaretrovirus that may infect at least 4% of the population can be whitewashed from the memory of science and history, so can - and will - that of any other pathogen, be it HHV-6, Lyme, or anything else. This isn't just an issue for people who support the XMRV hypothesis - it is an issue for everyone who wants good science to be done on this disease, now or ever.

Something about myself...for old friends and new ones too.Just a little something to let you know a little (more) about me.I'm married to the most amazing man called Clive and I will be eternally grateful for having him by my side through all we have been through and so lucky that I met him when I was only 15 and he was 18. We have built a life together and gone through some very tough times that have made us love each other even more and strengthened our relationship.I have a wonderful caring family especially my parents Alan and Madeline and my brother Alan and his lovely family.I have friends who mean the world to me even though I don't see them very often...they are always in my thoughts and forever in my heart.I live my life these days mainly through the internet, Facebook has opened a whole new world to me and I have made some friends that I truly cherish, reconnected with friends that I am loving having back in my life and also keeping in touch with old friends and family on a daily basis. Just by reading what they are up to I feel part of their lives again.For the past 14 years I have been coping with a chronic illness called M.E. It's not so widely understood...it even confuses me...and it affects every part of my life, bringing so many limitations to my life that i have now learned to take each day as it comes and live for the moment.I am blessed that I am a creative person. Nothing I make is particularly wonderful but I love the excitement of making something from nothing...recycling old fabrics or creating something from wire that turns out beautiful (to me) is one of my favourite pastimes.I am a friendly caring type of person and I always try to stay true to my Geordie roots. I live in Scotland but I am proud to be English through and through and am lucky to have a lovely home and a garden that I adore working in when I am well enough.I adore animals and over the years we have had 13 cats, 3 dogs,5 goats,numerous chickens, cockerels, fish and visiting hedgehogs, house martins and pipistrelle bats.I love movies, music and reading and can quite happily while away many hours just content in my own little world reading poetry or science fiction novels.My favourite place to be is right by my husbands side...wherever he is I am happy!I love the sea, I am originally from a coastal town so whenever I am feeling low I head for the seaside, which thankfully is only 20 minutes away.I am not particularly religious although I do believe there is some higher power. I suppose I am a type of agnostic, but one that really truly wants there to be a God, a God that is kind and just and not at all judgemental or vengeful. I think my morals are my religion and for now that is enough.I'm not a great talker but I am a good listener. I always try to help people whenever I can and I can always say I did try.I have been hurt in friendship by a person I loved like a sister.She was overcome by alcoholism and sadly became a different person because of it. She was the most adorable, kind and funny friend anyone could wish for but alcohol slowly stripped that all away and left a shell of her former self, a paranoid, hate filled self distructive shell. We broke our friendship because of how her abusive behaviour was affecting my health & also I wasn't good for her, I was always forgiving her when she really needed someone stronger to stand up to her appalling behaviour.Only six months later she was dead. I have an overwhelming hatred for alcohol now...it cost me my best friend!This has not stopped me from loving. Life must go on and new friendships and old have even greater meaning to me now. I have learned from that experience though. I have learned that people must want to help themselves before anyone can help them. I hope all my friends know I am here for them and that I will move heaven and earth to be the best friend I can be.I think I am a positive person and I am happiest when in the company of people who can express themselves with humour. I've lived by the funniest man alive for almost thirty years so it had to rub off on me...lol.When I am cured of M.E. I am going to make up for all these years where I have missed out on the people I love. I am never going to say no to anything and I am going to live my life to it's fullest again.I suppose there is lots more I could say but that is the basics about me.Carole.x